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CA 125 continues to rise

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I had my lab drawn on Monday. My CA 125 was 77.7. The doctor had told me previously if it was 80 - 100 he would want a repeat CAT scan. He will only begin treatment again if the CAT scan shows something, and they have been negative so far. So the good news is that I don't have to have a CAT scan yet. He had also told me that some people level off between 100 - 200. I hope I am leveling off. It has only been a 22 point increase in 6 weeks. I still have no symptoms of anything, so that is also good. I am waiting for the doctor's office to call me with a plan, but I am hoping to have another lab drawn in 6 weeks. The doctor's wife just had a baby on Monday, so I am not sure when he will be back in the office.

Wishing everyone a Happy and Healthy New Year. I plan on continuing to enjoy each day. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm sorry to hear that your numbers are rising. But of course glad you have no symptoms. This CA 125 marker really has me stumped. It's not really reliable when low and not always reliable for all with uterine cancer - so why are the docs using this??? I wish they would come up with another marker.

I am due for blood work next week and I am requesting the HR6 and HE4 tests plus CR-P in addition to my CA125. I haven't heard back from my nurse. I'm probably upsetting the perverbial apple cart.

Anyway, back to you. I hope this means nothing, but glad he has a game plan to deal with any more increases. Enjoy your New Year - may it be a turning point toward HEALTH IN 2010 for us all.

Blessings, Mary Ann

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My CA-125 spiked up from 11 to 155 in a 3 month period. That's the kind of jump that is worrisome. Try not to worry about this gradual rise. ((((Ro)))))

DaughterNo1's picture
DaughterNo1
Posts: 14
Joined: Apr 2009

Last April, I posted my mother's experience on the other UPSC message board (she was diagnosed in 2008, had hysterechtomy, liver tumor and gallbladder removed, PET scan clear in April 2009, had quadruple heart bypass in May, now recovering very well.) My 77 year old mother is an amazing survivor! She had a follow up PET scan last week and everything was clear except a small area where the gall bladder had been. A part was "lit up" so they did a a blood test; Mom's CA125 is 22. Her doctor seemed pleased and said the part that lit up was probably fluid (she had fluid before in other areas) She will have another PET scan in 3 months.

Has anyone ever had a similar experience? Just because a PET scan "lights up", can it be from other reasons, not just cancer cell activity? Does the low CA125 confirm this?

I've read about this on-line but it sure makes a difference when I hear comments by people who have had similar experiences.

Although my mother is the one who has cancer, I get so much strength and inspiration from reading the posts by all these courageous women. And, this helps me to be strong for Mom. Thank you to everyone!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Yes, Pet scans can light up if there is inflammation (rapid cell activity) as well as cancer. Maybe other reasons. My original PET taken 1 month post surgery was lit up from head to toe - scared me to death. Next one (after treatment and many irritating contacts with my insurance company,) was negative.

My doc thinks is was a false positive not "skipping" (my abdominal lymph nodes were clear and it is rare for this to happen with positive nodes elsewhere per doc).

Hope this answers your question.

thank you
Posts: 77
Joined: Jun 2009

My mom had an MRI (at 6 month follow up after the end of chemo and radiation) which showed a suspisious lesion in vaginal cuff. She then had a PET scan which lit up. We were scared to death that this is a recurrence. We were given the option of repeating the PET scan in 3 months, but we opted for a second laparoscopy, which showed ONLY inflammation. So, this happens. Your mom is an AMAZING SURVIVOR!! Enjoy!!!

deanna14
Posts: 743
Joined: Oct 2008

I had a PET scan after finishing chemo and had 2 lymph nodes "light up." After 2 negative biopsies, repeated CT scans,(at 3 month intervals), have shown these lymph nodes have progressively gotten smaller. One of which is still detectable, but essentially back to normal and the other is "almost" back to normal. Of course I still worry if I let myself, but my doctor was confident enough to wait 4 months this time between scans. My CA-125 has never been elevated, so this just is not a reliable marker for me.
Wow! Your mom is a trooper! She has been through the wringer, bravo to her!! I hope and pray she has an amazing 2010! God bless.

DaughterNo1's picture
DaughterNo1
Posts: 14
Joined: Apr 2009

Thanks for your informative and kind comments. My mother has a follow up PET scan scheduled for April 6th. Her doctor said she thinks that inflammation is causing the PET to light up. I appreciate your input!

Cindy Bear
Posts: 570
Joined: Jul 2009

FYI_ Pet scan readings. My mother's gyn/oncologist told me that any SUV reading (that's Pet scan measurement)of over 2.7 is malignancy. The SUV= standard uptake volume. That measure how much of the radioactive glucose the cells are taking in, the theory that cancer cells take in more becasue they are more active. Yes inflammation and infection can make areas light up but he stated very very firmly that anything higher than 2.7 is malignancy.
I hope this info. helps you.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

My CA 125 is now up to 119. It was 77.7 6 weeks ago. So I will have another CAT scan done on Monday the 15th. I will see the doctor again on the 22nd and he will review the findings. He said if the CAT scan shows something, he may want to biopsy the findings. I guess that will determine where it is. He will then discuss the treatment plan. Otherwise if the CAT scan is negative than we will continue to observe. That is what I am hoping for.....just more observation. The physical exam was good, with no abnormalities noted. I am feeling good and feel like I am back to where I was pre-surgery. I am thankful that I do not have any long term side effects from the chemo or radiation like so many have discussed. So 2 more weeks to enjoy each day. In peace and caring.

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

I'm so sorry to hear about the rise in your numbers- I'll be thinking and praying for you!

hugs,

Amanda

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'll be thinking of you Monday as you get your CT-scan, as I'll be having a PET/CT scan Monday, too. We can hold virtual hands through cyber space, just as we will be holding our breaths simultaneously awaiting our results. Scan days are so HUGE; so much hangs on what happens, what they see and what they think we should do about it. I never pray for a clear scan; instead I pray for an accurate one that leads to the right decision. But in my heart I am yearning for NED, still hoping for that long-shot miracle, fingers-and-toes crossed for luck!

This will be my first combo PET/CT done on the same machine back-to-back, a 3-hour procedure including the 1-hour 'quiet time' for the PET contrast. Last time I just originally had a CT-scan, and the results of that triggered a separate PET scan. Anyone have any insight for me on what to expect from a combo CT/PET? Because one of the nodes they suspect is cancerous is in my armpit, I will have to keep my arms above my head for the entire time. Last time I had my 1st PET (November 2009), even with it just being a PET-scan alone without the CT part, my hands went numb and I had to sleep with a heating pad the following 3 nights because my shoulders ached so bad for days. Does anyone know the actual time I will be immobilized in the machine for the combo PET/CT?

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

For comfort, before you get started through the tube, ask for as many pillows as you need to make yourself fell comfortable. Seems like tube time is 30-forty minutes, maybe even less. The PET/CT combo subjects you to much much less radiation than the CT would by itself.

Wish they would give Roberta the PET/CT combo too.

claudia

Ro10's picture
Ro10
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Joined: Jan 2009

I will think of the virtual hand holding on Monday. Maybe you could ask for pillows to rest you arms on to get you comfortable, and warm blankets too. It did not bother me to keep my hands above my head. Many times I sleep like that.

I am not sure about the PET/CT scan combo time frame as I have never had one. I would not think it would be much longer than the PET scan though, but I sure don't know.

Hoping you get good results and those nodes have shrunk or even better disappeared. I too hope for a miracle for you. In peace and caring.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am appreciate the anxiety that you both are experiencing as your approach your scans tomorrow. We are all hoping for LOTS OF VERY GOOD NEWS for both of you! There are so many of us that are wishing you both the very best!!

Karen

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

I am very saddend to hear that your numbers continue to climb. Ocassionaly, the elevated CA-125 can be due to other causes. Wishes that that will be so in your case.

Warm thoughts,

Claudia

fuzzytrouble's picture
fuzzytrouble
Posts: 213
Joined: Feb 2009

Here's hoping that it's just a something else that caused the rise in your numbers.
Hugs to you.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Ro - I am also sorry to hear of the rising numbers. I hate this cancer stuff!!!!

Linda, scan will take about 30 min- I was given earphones and music to pass the time. Bring your own just in case.

My thoughts and prayers are with you both of you. Mary Ann

deanna14
Posts: 743
Joined: Oct 2008

Ro, sorry to hear your CA is rising, hopefully it is for benign reasons and observation will be the recommendation! Your positive attitude is an inspiration.

Linda, I have been sitting here trying to remember the differences in the CT and the PET/CT. The mind is a wonderful machine, as I can't remember... lol. I do remember that they started an IV. There was some reason that the port could not be used for the PET portion of the exam, but I can't remember what it was. I don't recall that the actual time on the exam table took much more time. Sorry I am not much help.

You will both be in my thoughts and prayers...

Ro10's picture
Ro10
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Deanna I was told that the solution for the PET scan is too thick to give through the port. I guess they use a thick glucose solution. Hope all is well with you Deanna.

Ro10's picture
Ro10
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Today I asked the radiology RN why a port cannot be used for the PET scan. She said they use such a small amount of contrast for the PET scan and they are afraid the contrast will stay in the port and not be distributed throughout the body like it will if it is injected into the vein. That would affect the results if the contrast stayed in the port.

The lab person is the one who told me the glucose solution was too thick for the port.

I only had the CAT scan and had to drink the Barium drinks. I had to drink 450 ml at 8:00, 9:30 and 11:00. I did not think I was going to be able to keep it down. I don't know if it was the consistency or what, but I did not like it. I had banana flavor. It did not really taste like banana, but did smell like banana. They give you the barium drink to start at home, other wise you need to go to the radiology department 2 hours ahead of time and drink the contrast there. I will opt to do that the next time, rather than drink that barium stuff again.

Won't get my results until next Tuesday when I go see the doctor again.

Linda hope your PET/CT went well and you get good results. In peace and caring.

norma2's picture
norma2
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Joined: Aug 2009

I will be thinking of you and praying for everything to be ok for you. Norma

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I just got back 1/2 hour ago from my CT/PET test. They were able to use my Power Port to give me the radioactive stuff for my PET, although the technician said they now have to give 30 cc's (not sure of that 30 number; but that's what I think I remember, anyway quite a bit more) of the heparin port flush just before they inject the other stuff in there so that it doesn't pool up near the port. I didn't have to do the barium thing for the CT part, but did have to drink the 2 styrofoam cups of the Crystal Lite stuff. Between 'drinks' they sent me up to oncology to get my port rigged to be accessed (where I ALSO got the heperin flush!); and after it was over they sent me back up there to have the rig unplugged from my port.

I am ashamed to admit that I actually cried during the last minute of the PET. My shoulders started hurting within minutes of having to raise them over my head on the narrow u-shaped place where your head goes on the table. I think it must pinch a nerve in my shoulders because my hands go numb immediately and the pain gets steadily worse as the minutes pass until I could feel tears pooling up in my ears as they ran down my cheeks. I made it until almost the end of the scan before I was crying enough that my chest was moving from trying to hold back the sobs. They said that wouldn't affect the scan. Hope not. I was so good about not eating any carbohydrates all day yesterday, and having nothin but water all day today until my 3 PM scan. I didn't even touch my Valentine chocolates until I got home!!

thank you
Posts: 77
Joined: Jun 2009

I do wish and pray you both have good results!

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

Hoping the results are good and lead to resolution for you. I think you are probably right about the pinched nerve or nerves when you put your hands over your head. Maybe your MD could offer something when you have a scan that requires this position.

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Hi Ro,

I have been thinking a lot about you. How did your appointment go?

Talk Soon,

Amanda

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

The good news is I don't have to go back for 6 weeks, but will need repeat lab and CAT scan again. This CAT scan showed some questionable lymph nodes from the previous CAT scans. They are in three different areas. He does not feel it is time to treat yet, but continue to observe and repeat the CAT scan. He said the likehood of going back on treatment is 100 per cent, but he can't say when. He said I have a slow reoccurence. He said that waiting for treatment would not effect my prognosis.

I asked about a PET scan. His answer was the same that people most get. Insurance companies don't want to pay for uterine cancer diagnosis. He feels that the CAT scan will give adequate results to show if the nodes are growning.

Because it has been 6 months since I had my last chemo treatment, I will be able to go back on the chemo I previously took. My CAT scan will be the first week of April. I want to get the gynocologist/onocologist's opinion on when to start treatment and what his recommendations are for follow-up. The onocologist in Quincy is not a gyn specialist, but will follow this doctor's recommendations.

He said the chemo will be every three weeks, like it was before. He said he could not say how many treatments would be needed. It would depend on how I respond to the treatments. I asked about Doxil and he said he would use the Taxol/ Carboplatin first.
He also said that Doxil is not so toxic to the heart......like Adriamycin (an older chemo drug) was. He said Doxil has been around for about 10 years and is approved for ovarian cancer, but not uterine cancer. Even though UPSC acts like ovarian.....insurance companies don't recognize that.

If I need to start treatment right away we will return to Illinois and start the treatment there. If we are continuing to observe, we will see what the weather is in Illinois as to when we return. I continue to feel very good. The doctor said as long as I don't have any symptoms we will continue to observe. Please keep the prayers coming.

So we will try to put this on the back burner and enjoy the next 6 weeks, and enjoy each day as it comes. In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I will be thinking of you and hoping for the very best for you. You are in my prayers.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

RO...It was good to hear from you. I also have been wondering how you were doing and what you found out. I will keep you in my thoughts...wishing very positive vibes! You are such a calm, caring person and truly an inspiration to me!!

Karen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

So glad that you have 6 weeks to continue to enjoy life before your next CT. How different oncologists are! My CA-125 went up, and I had a similar CT-scan as you had with 3 lymph nodes possibly in play, but I was given a PET scan the next week and was in chemo the week after that. But, honestly, I think the surgeon that put in my port explained it best. He told me that with recurrance, so often the patient drives the treatment decision because some people are just happier if they are DOING something about their cancer, whether it changes their overall prognosis or not. He told me that some people cannot relax and be happy during their out-of-treatment time once they know something is wrong, and are actually more relaxed and happy if they feel they are doing something to control what is happening to them. I was offered the option of waiting a month or starting chemo right away, and I went for the chemo. I wonder if that offer was made because psycologically my oncologist thought I needed to DO something about my recurrance. I wonder how much that attitude will play into what I do next.

I got my 'official' results from my chemo-oncologist Friday morning, which turned out to be exactky the same as the UN-offical results I posted earlier. My oncologist said "Congratulations! It looks like we got your cancer back under control!" He said 2 of the lymph nodes that lit up on my November PET scan were no longer visible, and that the para-aortoc lymph node that lit up in November is now only 12mm and 'not active'. I asked what that meant since my CA-125 went up 2 points the week before, a seeming contradictory indicator. He said we'd talk about all that on Thursday during my appointment. We agreed that I should have another CA=125 drawn that day. So I'll get his opinion and then see my gyn-onc Monday and get his opinion. I'll be sure and post and let you all know what they both had to say.

RO, I'm so sorry that you have wandered over into our little 'recurrence group' and hope that we can support and encourage each other in this next leg of the journey. I know the awful sinking feeling, almost worse than originally finding out you have cancer. Because now the battle looks endless and un-winnable, and the hope of a cure is discouraged. I like the way your oncologist thinks and I will take that new input into my upcoming 'treatment decision' appointments and try and be open-minded to taking a chemo break if it is recommended. My fear has been that the cancer would 'get out' of my lymph nodes and invade a nearby organ. Perhaps this fear is ungrounded or exaggerated in my mind?? I need to ask that. If the cancer is unlikely to wander into a nearby organ, maybe i can relax and not take a maintenance chemo to try and keep it contained within the lymph system. Does anyone have any knowledge about that?

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Linda my lymph nodes are apparently much smaller than yours have been. My changes have been very minimal mostly about 1mm changes. One pre-tracheal node went to 1.4 cm X 0.7cm from 1.0cm X 0.6 cm. That is why the doctor just wants to observe. He says different radiologist can interpret the readings differently. Makes you wonder why when you have the CAT scan done at the same facility, the same radiologist does not interpret them.

My doctor did say that some people would start chemo because as you said they feel like something needs to be done. He told me previously in the fall that he wanted to save the chemo for when it would do the most good. That is why he does not treat the CA 125 but only when the CAT scan shows something. He said he is sure the CA 125 will continue to elevate in 6 weeks, because it has been gradually raising each test.

When I was first diagnosed the doctor told me the likelood of being cured was slim, but hopefully it could be treated like a chronic disease. Therefore I have never thought about a cure.......rather prolonging treatments. I had just hoped for a much longer time to prolong the treatment.

I am glad your official report was as good as the Unofficial report. I don't think that your fear of the cancer getting to a nearby organ is unfounded. Because this cancer is so "sneaky" and aggressive it is very likely possibility. Because the lymph system goes throughout the body like the circulatory systems, these cells can travel anywhere.

Hope your appointment on Monday gives you some peace of mind. You have been through so much. I admire you so much. I hope you are finding time to enjoy each day.

I appreciate all the support and encouragement everyone offers. It means so much. It is so good to be able to express yourself and not be judged that your thinking is wrong. I still strongly believe that God has a plan, and I pray for the strength and courage to accept his plan ( and not question the plan, too much, which sometimes is easier said than done). In peace and caring.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending more hugs, thoughts and prayers your way...

Laurie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi, Ro! I do think my lymph nodes were initially a bit larger than yours, but not by much. My PET scan from back in November showed 3 "FDG avid" (meaning they lit up on the PET scan) nodes. The one in my armpit (now invisible!) was 1.0 x 1.2 cm. The retrocrural lymph node (I think that's the one behind my stomach) was only 8 mm and is now invisible. The para-aortic lymph node that is now 12 mm (and not lit up) was 1.9 cm x 2.1 cm.

I'll let you know what my 2 oncologists say about what I should do next. (((hugs)))

maggie_w
Posts: 18
Joined: Jul 2009

linda,

i was so glad to hear your official results matched your unofficial ones, and that your cancer is under control. i, too, would be interested in knowing whether the cancer cells can wander from lymph nodes to nearby organs; i do hope we can relax about that. sorry, not to have more knowledge. i appreciate your constant curiosity and interest in finding out more and more about our cancer; i'm not really like that. for me, it's worked to read what you and others have said, talk to my doctors, and basically try to live my life. i can get overwhelmed with too much information, but i have to say, what i learn new on this discussion board is almost always helpful. also, sad and depressing some of the time as well. i'm hoping for everyone's continued good health. i know there are women here who are facing more cat scans, ca 125, etc. i do know that a few points up or down on the ca 125 are not meaningful, and it's often true that they can level off. my acupuncturist has said it's the trends they look at primarily, not individual numbers, though if there's a big spike, a new ca 125 is usually requested.

early on, linda, you responded to my query re: even doing chemo. you encouraged me wholeheartedly, which i appreciated. i have done the chemo, got through it, though sometimes difficult, not unbearable. and am not doing radiation. the tumor board where i see my doctors (northern california) do not recommend radiation, though my gyn onc does--the brachey kind. but, i don't think it's worth it, and most of the other doctors don't either, since i did not have cancer in the area they would radiate.

it's been only 3 months since my last chemo, and ned, and i'm feeling good so far. it's all such a crap shoot, though, no rhyme or reason, and so out of our hands. i'm used to controlling a lot of my life, as i know so many of us are here, so it's such a blow on so many levels to not be able to really make much of an impact on this disease--other than visualizing healthy cells, and doing all the things we know to do to make our bodies as inhospitable to cancer cells as we can.

while i don't post much, i 'm so grateful and appreciative of everyone here.

warmly,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

My CA -125 is up to 645 (from 449 in October. Again the doctor said "it is just a number". The CAT scan shows minimal increase in the lymph nodes they have been observing. The doctor says the growth is very slow.

He gave me three options:
1. Do nothing and continue to observe with tests in 2 - 3 months.
2. Start back on chemo. It would be Taxol/Carboplatin like before. (But chemo is hard on the body and blood work). He said some people do develop an allergy to the Carboplatin.
3. Try hormonal therapy. Take one pill a day for 2 months and recheck CA 125 after the 2 months. The doctor said sometimes the hormone stabilizes the CA 125. He said it is usually used in breast cancer. He said it could be either Tamoxifen or Arimidex.

He said he knew it was a tough decision to make, but if I were to ask him what he would do, he would try the hormone therapy.

He said if the hormones do not work, we could always use the chemo. He said since I have no symptoms and feel so good, the chemo would have much more side effects than the hormone therapy. He said he did not want to start chemo too soon (for better quality of life - right now) but did not want to wait until the cancer made me feel so bad that the chemo would make it worse. He again emphasized that this cancer was not curable, but treatable.

I asked about a HER- positive or HER negative tumor. He said he did not know if that test was done on my tumor. But he felt the hormones were worth a try for 2 months.

I asked how high he has seen the CA 125 go up on people with UPSC, and not need treatment. Again he said it is just a number. Some people have minimal increases and need treatment, others have bigger increases and still do not need treatment. He said ovarian cancer patients can have CA 125's in the thousands. So he really would not give me an answer. But emphasized, I would need chemo again, sometime, whether now or later.

So I went with option number 3 and will start Arimidex for 2 months and have my CA 125 rechecked in 2 months. The pharmacy did not have it today, so I hope they get it in tomorrow. So I will treatment free for at least two more months. My husband and I are celebrating. In peace and caring.

nempark
Posts: 683
Joined: Apr 2010

Do just that celebrate with your husband and take one day at a time. Much comfort. June.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm glad you're not letting that CA125 number scare you, and I also believe a celebration is in order that your chemo break continues! If the hormone therapy keeps your cancer in check, that's a wonderful option that can keep you out of chemo for years if it works. And clearly your cancer is VERY slow-growing and you can safely give this easier treatment option a couple of months to see if it could work for you. Every month you can extend the break between chemos, the better your chances are that the chemo will work when you finally start getting it again. And the longer your safe chemo-break can be, the stronger and more battle-ready your body will be. GOOD STUFF, RO! I'm very happy for you!

Because my cancer appears to be faster-growing, I am not yet in a place where I can join you just taking a pill, but hope to get there with this carboplatin chemo. (I am ER- and PR-, so it's a lomg-shot that hormone therapy will do anything for me, but if I ever get NED again, we've decided to try it a couple months anyway.) I'll know more of whether carboplatin has a chance of working for me when I get my CA125 (currently 229) taken next week and can see if the 1st round of carboplatin did anything to drop that CA125 number. I had indigestion and felt crappy for the 1st 7 days after my carbo infusion, but by the 8th day I felt like my old self again and I've already gained back 5 of 7 pounds I lost during that 1st week of having no appetite.

MERRY MERRY CHRISTMAS TO YOU ALL!

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Ithink you made the right choice. It can't hurt to try as long as he is watching you closely. Chemo is always there if you want to go that route.

She gave me the option of continueing avastin for 18 months for maintenance. I don't really feel sick on it so I will give it a try. I am not sure if the 18 months includes the 8 I have already had. It is controversial and she gives me the choice. It's hard to make choices, isn't it? I also think we are all different and different choices have to be made. I've done well with avastin/doxil so I will try it. I can always stop if not working. You enjoy the holidays.

Love,
Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The danger with Avastin, although very rare, is bowel perforation. But that is unlikely unless you have cancer spread into your bowel or some other inflammation of the bowel going on. I can't remember if you had pelvic radiation that could make you more prone to bowel inflammation. I know that my having had pelvic radiation is why my gyne-onc is hesitant to give me Avastin now (although he hasn't ruled it out 100% for later on in my journey). But if you haven't had any radiation that could have weakened your bowel, and you don't already have high blood pressure, I think trying Avastin is well worth the extremely small risk of bowel perforation. I'd go for it under those circumstances. (((Diane)))

An interesting thing I read about Avastin is, that if your blood pressure elevates during treatment, that's a GOOD sign that the Avastin is working, that those whose blood pressures went up a bit in treatment had the BEST response to the drug.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Ro, I am glad that you will continue to have a break from chemo while you see if hormone therapy works for you! That may be the missing puzzle piece!

I am continuing to send you positive energy. Enjoy the Holiday season!!

Big Hugs!

Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

ro,
decisions are hard to make, i know, but i'm aiming for hormonal therapy, or even immunotherapy before i'd go back to chemo, if i have that choice. i'm glad you decided to go the hormone route. was there a reason why your chose arimedex rather than tamoxifen? i, too, am glad you can prolong your chemo break. it always seems to me if we have choices, that's the last one. as we know, it's always there.

linda, i'm so hoping the chemo lowers your ca 125, so that you can have some peace knowing the chemo is working. thinking of you both, and wishing the best for each of you.

i don't find out the results of my ct/pet until end of the month, which is ok with me. i had my ct/pet scan (first combination that i've had), and had a coughing fit in the middle of it. pressed the button for the tech who came and said not to worry, but then i coughed again, and of course my entire body shook, so he said some of the results during those couple of minutes could blurry...oh well, don't know why i coughed like that, probably nerves, though i wasn't conscious of being particularly anxious during the procedure. tech said it would take about ten minutes, but, please, it was at least 20 minutes if not 30. took half the day just to get it done, what with drinking 24 oz of water an hour before appointment, then having the glucose iv and having to sit quietly for another hour, then drink another 8 oz of water.
geeze.

in any case, hope everyone has happy holidays, and may next year be better than the last and not as good as the next.

sisterhood,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

The doctor talked about Tamoxifen and Arimidex. When I told him I wanted to try the hormonal therapy, he said we would use Arimidex. Don't know why he chose that one. I know it is a lot more expensive than the Tamoxifen. More than $11 a pill (and this was the generic). But that is a lot cheaper than chemo.

I just started the pill today, as the pharmacy I went to yesterday did not have it. They ordered it, but it did not come in today, so I went to a different pharmacy.

Maggie, sorry you had that coughing spell. Hope it does not hamper the results. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

just went back to some former posts and learned you're taking arimidex. that wasn't even offered to me. i'll google it. i'm glad you're doing well on it, that's very heartening. also learned they didn't test you for pr/er , but my doctor says most of us with upsc are negative, and i've read that elsewhere. hope you continue to do well, and that it does exactly what it's supposed to do. keep us posted on how you're doing along the way. i also am taking the hormones for two months, though one month one hormone and one month the other. funny how different all of our protocols are; and how different all of our doctors are. i guess, that too, is the luck of the draw.

wishing the very best for you, ro.

sisterhood,
maggie

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I didn't have pelvic radiation. I did have brachytherapy and I guess it's near impossible to give without getting some of the bowel in. I've been on it for eight cycles now. It's easy to take. I know it's controversial but this cancer we have is just now being studied and most of the data is on ovarian.

I read the above blogs and I can't believe what we all cope with. I know we've all had our share of laying on the sofa and feeling so yucky. But to me, you are all shining stars!

Diane

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